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Sunday, October 28, 2012

Any time I am out and about with Kayli, she opens hearts and frees spirits around her. The conversation usually starts with "what is wrong with her?" or "poor baby" and "how can you be so joyful and happy when you talk about everything that has happened to her and your boys?" My answer is simple.... "I am Blessed". To help others understand just how Blessed I am with the life He has given me, I have written some comparisons of my Children with some other of God's creations.

If you open your heart, our spirit, and your mind, I'm sure you will see just how Blessed we all can be!

Ladybugs

Our children are much like ladybugs. Ladybugs are found in all climates and come to us in all seasons of our lives. Their life cycle is apprx 4 weeks, which ties the ladybug to the energies of renewal and regeneration. The shorter life cycle teaches us how to release worries and enjoy our lives to the fullest in each moment. We do not love the ladybug any less because of the shorter life cycle, but we cherish the "let go and let God" peace about them. A ladybug, with it's bold and distinguishing features, brings joy to us, as much as it has a protecting nature, and eats parasites in our gardens. It is amazing that our children, as well as ladybugs, are harmless, delicate, and fearless...regardless of their size. Ladybugs are messengers of promise as they reconnect us with joy of living and loving life as it is meant to be. When a ladybug appears, it is telling us to get out of our own way, and allow the wonderful Spirit to enter our lives. Thank you for opening your wings, lil ones...and for helping us see what a "short life cycle" can hold.

A Pearl

A life affected with Trisomy is much like finding a pearl. A pearl is made spontaneously by nature, without human intervention. An oyster is protecting the mollusk from an intruder or irritant, by creating a pearl sac to seal off from damage or harm. God has chosen us to be the oyster for our pearls. Our children, no matter the the threats or damage brought until them, are made into perfection by the harm and damages they encounter. The pain and injuries caused by the irritant is overlooked and adapted into perfect, beautiful, glorious work to behold as rare and Devine. We have much to learn from the pearls of our life!

Diamonds

The day babies with Trisomy are born, they truly are Diamonds, in the rough. Diamonds are found deep beneath the earth's soil, covered with earth's nature elements. Before diamonds are at their best state, they must be dug from their lowest point in their life, and polished, or treated (if you will) in order to shine as the jewel they are! Once in our loving arms, treated in such caring ways... babies with a Trisomy syndrome become the diamonds that will forever be; our best friend...our diamond. ♥ Trisomy Families are Forever proud to show off our Diamonds! ♥

Kayli has been doing very well since coming home from the hospital. :-). She had a chest CAT scan (CT scan) recently because her Cardiologist was not able to see her Pulmonary Artery well enough at her yearly Cardiac follow up appt. Her specialist thinks he may have seen some narrowing (stenosis) of her artery, so he requested Kayli get the CT scan to get a better look at it. We hope to get the results back tomorrow.

Thursday, October 11, 2012

Kayli spent 10 days in the hospital with Viral Pneumonia. She had Rhino, Enterovirus (the common cold). She was on the CPAP/vent for several days because her little heart was so tired and she needed a little help getting enough air to push open her lungs. The PICU dr's explained that Kayli would need to fight the virus herself (there are no meds to help). Putting her on the vent settings to breathe for her would only allow Kayli to stop fighting....she needed to fight off the virus. By putting her on the vent with CPAP settings, she was able to fight/breathe on her own, but with a little umph/help to open her lungs. Again, odds against her, KAYLI SURVIVED!!! The wonderful thing about Kayli being on the CPAP machine, is that it helped retrain her on how to breathe and swallow! lol She now is a mouth breather instead of a trach breather! This is a progressive step towards capping her trach, her speaking, and eating again!!! Just a little reminder here...Things happen for a reason! God has the plan, even if we don't understand why we are in the journey as we are! ;-) If Kayli wasn't admitted and put on the CPAP machine, we wouldn't have known she could learn the reflexes she has learned now!

Kayli came home to us with 2 doses of steroids left to take (she has asthma). Her pediatrician thinks she wasn't on the steroids long enough, because merely a week later Kayli was taken back to the hospital for the same virus (although no longer in her lungs/pneumonia). Basically, she was not entirely healed and the help she was given made her look better than she was. She went back to the hospital to continue healing, but is back home with us and is doing GREAT!!! Her asthma is under control, and she is back to being alert and anxious to learn! She turns her head towards us when we enter the room, she smiles with verbal prompting, and follows with her eye gaze during vision therapy!!! We are keeping her out of school for a month per dr's recommendations, so she is well enough and equipt enough to handle another virus spreading through classrooms. In the meantime, we will continue to do the therapies at home. I am excited for her teachers and thearpists to see the great strides she is making!

Current home therapies include range of motion, exercise ball for ab exercises, switch toys for cause and effect, tactile (touch) for sensory, and her Ipad for visual training (she is learning to move icons on the screen with her eyes!). Kayli uses a hearing aid but does not have the needed FM system to sort out background noises. She has eyeglasses now, that are custom made because her ears are lower and her eyelashes are so long! lol Both are traits of Trisomy. We are putting her on the Passi Muir valve (speaking valve) more frequently so she continues to swallow, learn to vocalize, and exhale through her mouth/nose. It is amazing to see how resilient and eager to learn, she is!

On a side note, while Kayli was in the hospital, I too, was admitted. I had a mass and abcsess in my right breast. I was admitted through the ER on that Sunday, and had surgery the following day. I was in the hospital with Kayli for 6 days (in a seperate room). The first couple of days, I was not allowed to see her until Infectious Disease cleared me. It was very hard on her and myself because I was stayed with her at the hospital, told her I was going home to shower and that I would be back in a few hours. When arriving back at the hospital, I stopped in the ER first, because my symptoms got worse. They admitted me, and I was not allowed to see Kayli. It hurt, and I cried because I could not be at Kayli's bedside, supporting, advocating, and protecting her. The staff was so kind, they put the phone to her ear so I could tell Kayli why I was not there with her. Kayli's nurses would come to my room to give me updates on her care and recovery. After 2 days, the cultures came back, and I was allowed to spend time with Kayli in her hospital room! <3 We healed together, and we are both at home now. She is recouping faster than I am (she IS younger! lol). I have Multiple Sclerosis, and when my body is stressed (surgery and infection stresses the body) then I have flare ups. I am struggling with my MS right now, while admiring the resiliency, adaptibility, and courage my daughter has! Kayli is an inspiration, for sure! I am grateful God has Blessed us with the lives he has given us! <3

Kayli's Story

Kayli was born with Trisomy 18, otherwise known as Edwards Syndrome. Kayli has been granted 8 miracles of life! The miracles include surviving: Full Trisomy 18, 32 minutes of anoxia, 7 weeks of Endocarditis and Sepsis without antibiotics, a perforated bowel, a surgically misplaced Gtube for 3 weeks, a pinhole sized airway for 3 weeks (resulted in a tracheostomy), a heart med overdose (10X the amount of Clonidine), a Potassium level of 8.2 (range is 3.5-5).
Kayli has 3 older brothers, each with their own, rare disabilities.
Claim'er: Although Kayli's pictures, videos, and information are public, it shall never be used against her. It is not permitted to use Kayli's information, videos, nor pictures, for sale or profit in any way. Kayli's Krusade is to openly share hope, knowledge, resources, acceptance, faith, and to spread God's testimony of Love. You are welcome to share her story with others, as long as the intent is for her purposes, and done with respect for Kayli, our child of God. ♥